Doctors need to listen more to their patients

 

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To coin one of my oft-used phrases — ‘we’re going to have a sharing moment!’

I live with spastic diplegic cerebral palsy. Years ago an episode of chest pain required that I go to the city hospital ER 40 minutes away. I’m not a ‘frequent flyer’ in the ER so  to make the decision to go was not without a lot of thought. Do I really, really need to? At the time my husband was still living, supporting my decision.

Earlier in the day, while at the mall, I was having difficulty wheeling my Quickie chair up a ramp which normally was not a problem given my powerful upper body. I worried because my heart was hurting. My family doctor at the time made house calls and while attending me at my home after the mall outing, put me on his portable heart monitor. He was concerned enough after the exam to insist that I go to the hospital immediately though there was no need for ambulance transport.

I went to the hospital ER, outlining symptoms in detail, noting that my family doctor felt that I experienced a mild ‘cardiac event’ based on his exam. I didn’t have a long wait, thankfully. Given my status as an ‘at risk’ patient, I also have a need to be really proactive when it comes to avoiding too much contact with germs -- colds and flu. For me, a simple cold could develop into pneumonia.                                                                           

The ER doctor arrived and I took note of the fact that I wasn’t invited to get out of my chair to lie on the exam table. As was my habit, I wheeled around the space, mentally photographing the environment - part of my modus operandi in the event that I did have to stand up and make my way to the table. I prefer to move under my own power as being ‘manhandled’ had potential to cause me to totter/balance shift; then I have to  ’re-balance’. A fall at my advanced age poses even greater risk, given I am a senior citizen with a since-birth brain insult but still uprightly mobile; quite an accomplishment! I wasn’t about to jeopardize my health and wellness any further by landing on my bum and possibly breaking or dislocating a limb. It’s important for clinical staff, whether nurse or doctor, to ASK if a patient with obvious mobility disorder who IS able to walk, would like or requires assistance.  To not ask and simply latch onto them without regard for their personal safety is inappropriate as their boundaries were not respected.

I also noted another ‘problem’ with the ER doctor’s protocols. She did not wash her hands. I had observed her munching on a slice of pizza just moments before she came to see me but said nothing. I was asked about the reason for my visit while the doctor, rarely making eye contact, looked at the chart. She then asked why I was in the wheelchair and was informed about the spastic diplegic cerebral palsy status. Much to my shock, she asked what CP is. Confidence in this physician went right out the window, barreling down the highway. 

The doctor put the chart down, bent over and leaned into me and with her thumb pushed on my stomach. There was no blood pressure taken, no temperature taken, no questions about chest/heart pain asked, no questions about what I ate that day. Red flag! Red flag! Red flag! Red flag! In just seconds, the diagnosis - indigestion. She wrote a script for Propulsid, and with that, the  examination had concluded.

For the record, I’ve never had indigestion in my life. I would be remiss, however, if I didn’t point out that in many patients, heartburn and indigestion can and do mimic symptoms of a heart attack so ALL avenues must be explored. 

I accepted the script and bid the doctor good day, wheeling away without a backward glance. There was NO WAY I’d be getting that script filled. Once at home, I researched the drug and was stunned to learn that it had potential to cause fatal arrhythmia. It was finally taken off the US market in 2000. I had a conversation with my father, a old-school country doctor, and within days was examined by a cardiac internist in Fredericton. More tests followed, and I was subsequently diagnosed with grade two aortic insufficiency; two pinhead sized holes in the valve.  Had I taken the drug as prescribed by that ER doc, I could have found myself in serious difficulty, compromising the ‘golden hour’ of care lost because my proximity to the hospital would have most assuredly worked against me.

Fast forward over two decades later, and I’m still ticking along, paying attention to my body; 70 next year, I take only one script drug. My ‘good medicine’ is working!

My point in sharing this story is to make people aware that they have a right to assert themselves. To all doctors who may be reading this column, attention must be paid not only to what YOU see and hear from the body you examine, but what the patient is telling you. Hearing and listening is vital to outcomes. Let those two critical skills be your gifts to your patients as you work to establish a rapport that grows into a trust driven relationship that is critical to patient health going forward. 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Where do retired mobility aids go?

Elijah William James and friend

When I was born in 1954, the diagnosis of spastic diplegic cerebral palsy came within the first year, by Alexander Torrie, an orthopaedic surgeon trained in Scotland and paediatrician, Barbara Robinson-Watson, both practicing at the former Victoria Public Hospital in Fredericton, NB. Dr. Robinson was the only woman in her class in 1947.

My parents weren’t long getting everything lined up to do battle with that thing that insulted my brain.

Over the course of my early years there was a parade of ugly brown boots into which equally ugly heavy metal braces with leather straps and knee pads were clipped. For a tiny girl, that added weight threw me off balance. I was exercised 4 times/day for 12 years, had knee surgery at age 8, and have the distinction of being the then Forest Hill Rehabilitation Center’s first child patient back in 1966. At that time, they treated stroke patients and a few with spinal cord injuries. No paediatrics. I was a trail blazer. The facility opened in 1958 with Stan Cassidy being one of its first champions. Years later, it went on to be named after him and with the passage of time, relocated to the current Dr. Everett Chalmers Hospital. My last stint as a pint-size summer patient was spent at Rosary Hall, being taxied back and forth by my favourite nun, Sister Monica Guest. Her sister, Marie, my family’s housekeeper when I was a child was a great friend to me; one of many who influenced my moving forward through a life that was marked by a ‘different’ ableness. Next year, I’ll mark 70 years of upright mobility. There will be cake!

It was during my last extensive therapy summer that I was freed from braces. Oh, what a relief it was. I still used crutches, of course, to ‘straighten and slow’ my wobbly gait. Face-planting on gravel would never be a good look.

I believe that my childhood experiences would have been enhanced with the limited/outside use of a wheelchair, to get from A to B a bit faster. ‘Walk this way’, was cumbersome and exhausting. Over the decades, my shoulders, elbows and wrists took a hit because it’s not ‘natural’ to have that constant hyper-extension. There were penalties paid for independent movement.

Times and technology changed how those ‘leg irons’ look. Today, moulded plastic orthotics make life so much easier for all those children who came after me. My first experience with them was when I was 28 years old when it was felt I should return to orthotics to correct a gait compromised by age and a wonkier spine. The joy never ends. Their use was short lived as I was lopsided, given only one foot required heavy metal correction and the other the slip in the shoe plastic orthotic. I think I got 6 months in, then called the whole thing off. I was an accident waiting to happen.

My young Facebook friend, Eli, who recently passed away, started wheelchair training at the Patricia Neal Rehab Center in Knoxville, TN, and at 2.5yrs old, the youngest child with whom they had use the microlite technology. According to his Mom, “he drove with only switches for quite a while, training for a year. The insurance denied the chair he needed so we did a fundraiser to pay for his first.”

Later, a more mature Eli got another set of wheels.

The struggle for families like Eli’s is real. The right equipment enhances quality of life, notably the learning experience of early education with peers. Being able to move around boosts emotional and physical development given that fitting in is fundamental to life experience. It’s amazing what appropriate mobility aids can do for a child who does not walk.

So, what becomes of orthotics and other supplies we no longer need but are in good shape? Lots of things aren’t custom made so could be used by anyone with a few minor tweaks. The ideal solution is to get the medical supplies that you no longer need to people who can use them because they are poor or have little or no access to medical care. Many organizations will take no-longer-needed, or even better, never used medical equipment and supplies from hospitals, doctors, and dentists but not all take donations from individuals. I gave orthotics to a donations scheme for impoverished countries. My wheelchair, after 28 years of service, was donated to the Red Cross for their program.

Should you have equipment to rehome, the best course it to advertise, with description and photographs, in local newspapers and grocery/shopping center message boards. Be clear on how you want folks to get in touch with you so that interactions go smoothly. If you use social media, that is an ideal place to connect with people who can benefit from what you have available. The opportunities are endless.

Locally, small donations can often go to nonprofits like homeless or women’s and men’s shelters, so please check with the agencies in your communities who may be able to pick-up or have convenient drop-off locations. Yes, homeless shelters can make use of things like crutches, canes and walkers, though space may prohibit keeping even one wheelchair on hand. Calling ahead to find out how what you have can benefit their clients is a way to reach out to ensure you’re networking in an expeditious way.

Knowledge is power.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at mailto:carmacrockwell@xplornet.ca